COMMUNICATION

Bombobeach.com American Adhesions Support Group Inc USA “National Women’s Health Week” 11 – 17th May 2003  ARD (Adhesions Related Disorder) Awareness Night

 In celebration of “National Women’s Health Week” , the American Adhesion Support Group , umbrella organisation of Bombobeach.com had an "ARD (Adhesions Related Disorder) Awareness Night” on Wed. May 14th at the Westerville Senior Center, Westerville, Ohio. Anthea Nesbitt was the moderator, and the American Support Group Coordinator. Guest speaker for the evening was Dr. Stuart Jones, Ob/Gyn.

After a short introduction welcoming all in attendance, Anthea described the disorder, stressing that is an invisible, insidious plight in which sufferers face daily challenges including coping with incredible pain and often disability. Anthea also discussed the importance and advantages of a support group and how the members of the group are working on an Awareness Campaign in this country and internationally, as well as lobbying governments worldwide to recognise the disorder that presently discriminates against sufferers, including being unable to apply for social security benefits or disability payments.

Dr Jones, who is a specialist in endometriosis, has been in private practice for 12 years, is active with the Endometriosis Association Support Group and has also had training with Dr David Redwine [endo specialist from Bend, Oregon].

Here are some important points from his talk.

What are adhesions...

Adhesions are scar tissue that forms between two parts of the body. Organs normally sit next to each other, sliding freely within the abdominal cavity. These organs then become fixed, creating symptoms of twisting, pulling, and sharp stabbing types of pain.

Result of Adhesions...

The frequent results are: infertility, dyspareunia, debilitating pelvic pain, bowel obstruction and bladder symptoms.

Surgical and Non-Surgical Causes...

One study showed 50% of pelvic surgeries developed some degree of adhesions, and 1% of laparotomies developed some degree of adhesions.

Dr Jones emphasised the importance of good technique by the surgeon when operating. This comes with practice and education about the causes of post-surgical adhesions. Some of these causes can be from; blood: bleeding during surgery and after, cutting, handling of tissue, lint from sponges used during surgery, suturing, powder from gloves, and exposure to air and gases during surgery. The least invasive laparoscopic surgeries [using 3 small incisions and scopes to insert] can cut down on the amount of adhesion formation.
THE RATE OF ADHESION FORMATION IS SURPRISING. A review of autopsies on traffic victims who underwent surgery, 67% had adhesions and increasing to 80% with those having multiple surgeries. A 1990 study showed 80% of people that had undergone surgery had adhesions, compared to only 10% in patients who had NEVER had surgery.

Adhesions occur in response to injury to tissue.... it is the body’s natural response to protect and seal off that area. Some of the non-surgical causes are; endometriosis, infection, chemotherapy, radiation, trauma and cancer.

Impact...

In 1993 ... 347,000 cases of lysis of adhesions were performed, 100,000 involved intestinal adhesions ...these statisics are overwhelming. Each year 1.2 billion dollars are spent on adhesion related problems.

Chronic Pelvic Pain…

Dr Jones has many patients who suffer with chronic pelvic pain. He agrees that not all adhesions cause pain. After doing surgery on a patient just this week, he found her whole pelvis frozen in adhesions but the patient only had one area of pain from a re-occurrence of endometriosis. Not all pain is caused from adhesions!!! Not all surgeons agree that adhesions cause pain. Unfortunately, other then surgical evaluation, it is difficult to see adhesions with CT scan or MRI.

Adhesions are believed to cause pelvic pain by tethering down organs and tissues causing a traction or pulling of nerves. If bowel becomes obstructed, the distension of the bowel will cause pain. Chronic pelvic pain is said to affect 10-15% of women between the ages of 18 to 50 yrs of age. STUDIES SHOW THAT 40% OF WOMEN WITH CHRONIC PELVIC PAIN HAD ADHESIONS AS THE CAUSE OF THEIR PAIN. AND 17% OF WOMEN HAD ENDOMETRIOSIS WITH OR WITHOUT ADHESIONS AS A CAUSE OF THEIR PAIN.

Treatment...

The problem with adhesiolyses is that adhesions almost always tend to reform. This is one of the reasons why surgeons are reluctant to perform adhesiolyses. Physicians are also reluctant to perform adhesiolyses secondary to it often being a high-risk procedure. There is a significant risk of injury to; bladder, bowel, blood vessels and utterers. Given today’s medical-legal environment it will be even harder to get a physician to perform these surgeries. The risk of adhesions can be reduced with careful handling of tissues, significant irrigation during surgery to remove blood clot and blood products and using barriers. Unfortunately the use of some barriers to prevent formation of adhesions in this country has not proved to be reliable. The product SprayGel is now under clinical trials here but is being used with some success in Europe and Australia. With any of these products one must proceed with caution.

Complex Disease...

As with endometriosis, chronic pelvic pain caused by adhesions is a complex disease. Endometriosis can involve: chronic fatigue, depression, irritable bowel syndrome and interstitial cystitis. It is for this reason that chronic pelvic pain and adhesions patients must be approached as a team effort. It is recognized that emotional stress contributes greatly to the perception of pain and / or ability to deal with the pain. Dr Jones sees patients that have been to many different doctors, often told that their pain is in their mind or that they are drug seekers.

After his talk, many people had questions. All agreed that this was very informative and that they were not aware of ARD or the scope of how people are affected. As Anthea pointed out in her talk, many who suffer with this, suffer in a world of loneliness with little support from family, friends or medical professionals. People have lost their jobs, their livelihood, marriages and unfortunately their lives. The evening ended with refreshments and a raffle. Anthea commented to some people that her goal and that of Joanne Eslick, founder of bombobeach.com [and The American & Australian Adhesions Support Groups], that awareness is currently their number one goal. Since most patients in this country have little hope for a decent anti-adhesion barrier to be applied at the time of surgery, many are going overseas to have surgery and the product, SprayGel applied. This is not available yet in this country. Insurance companies are hesitant to pay for this surgery overseas. They would like to plan some fundraisers to help fund the expenses for some of these patients who are in great need for treatment.

For further information on, “Adhesion Related Disorder”, please contact; Anthea Nesbitt, The American Adhesions Support Group Inc, coordinator, nesbittan@yahoo.com

Joanne Eslick, founder of The Australian Adhesion Support Group, at joanne@bombobeach.com